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Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study

Codesigning a community-based participatory research project to assess tribal perspectives on... Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the American Medical Informatics Association Oxford University Press

Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study

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References (52)

Publisher
Oxford University Press
Copyright
© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association.
ISSN
1067-5027
eISSN
1527-974X
DOI
10.1093/jamia/ocac038
Publisher site
See Article on Publisher Site

Abstract

Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.

Journal

Journal of the American Medical Informatics AssociationOxford University Press

Published: Mar 29, 2022

Keywords: health information privacy; tribal consultation; community-based participatory research (CBPR); indigenous populations

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